Navigation

One of the first things we learned about my daughter is that she does not follow the rules. Her birth injury was so atypical and her functioning initially so typical in the first few weeks after birth that her Neonatal Intensive Care Unit doctors and nurses were surprised to learn that her injury was severe. As she has developed, she has continued to blaze her own trail, teaching us the wisdom behind seemingly contradictory statements that have direct application to the daily life lessons she provides.

Listen to the Messages in Expressive Silence and Silent Alarms

For a child who is nonverbal, she manages to speak volumes if you listen closely enough. She tells us more with her facial expressions, body language and rare vocalizations than most people can imagine. Before she could even smile and now during moments when her vision is inconsistent, she uses her hearing and sense of touch to recognize others, letting her body sink comfortably into arms she knows to be supportive. Her body language instantly makes us feel at ease and reminds us to trust and love those we care about unconditionally, as she does.

Once she was able to smile--and now whenever she's happy--her whole face lights up to express the joy she experiences from a favorite activity or person. She lifts her head to look your way and flashes her contagious full-face smile with eyes that sparkle and a wide chubby cheek grin that melts the hearts of anyone lucky enough to be on the receiving end of her expression. Sometimes just hearing a familiar voice (especially her siblings' voices) sparks her full-face smile, touching our hearts and reminding us to find meaning in life's connections.

When she's unhappy, her eyebrows furl, her lips purse tightly, her chin tucks, and then a super pouty lip is followed by eyes that glisten with tears before they streak down her cheeks. If she's in pain, her whole body stiffens and her mouth opens wide. Although she initially doesn't utter a sound, once she catches her breath, we know to expect a scream that calls to action anyone within a mile's radius.

We are definitely extremely saddened to witness her suffering and feel that it is very unfair that she should have to experience such discomfort, making us very motivated to ease it in any way we can. Much to our delight, once the pain diminishes and she has been consoled, she quickly returns to her content self and enjoys our company. When our emotions are managed well enough to be able to look at her experiences objectively--though admittedly that's very hard to do as her parents--her quick recovery reminds us to avoid being discouraged by negative experiences because positive experiences will soon follow and to find meaning in many small moments.

~~~

Flexibly Expect the Unexpected and Learn from the Consistently Inconsistent

We frequently joke that our daughter likes to keep us on our toes by changing her functioning without notice. She demonstrates unexpected behaviors at home, at school, or during therapy sessions, failing to discriminate according to the setting or individual working with her. This makes any kind of planning difficult, because even the best laid plans that factor in her unpredictability need to be adapted based on her sleep, seizures, or mood.

Her unpredictability can be frustrating at times, especially to a control freak like me who would love to know what is going to happen before it happens. However, by slowing down and taking a moment to put ourselves in her shoes and recognize the countless number of sleepless nights, visionless moments, immobile positions and uncontrolled seizures she has faced in her short lifetime, we gain perspective and are reminded to appreciate our blessings and avoid getting hung up on logistic details.

Indeed, given all she faces we'd expect her to be relentlessly irritable and frustrated with her lot in life. However, she somehow takes each moment in stride, possibly knowing that we are doing everything we can to help her, and that things may change for the better in an instant. Her adaptable nature inspires us to stay hopeful while trying to organize the chaos.

Furthermore, when we follow her lead and remain flexible, we are occasionally rewarded for our efforts while witnessing her take advantage of her inconsistent skills to do something completely amazing. For example, on more than one occasion she has used what little trunk control she has to hunch over but remain upright on her own, sitting pretty in her own way. During these moments you can tell she is very proud of her accomplishment, reminding us to be flexible and creatively find ways to keep moving forward so that we can achieve our goals.

~~~

Accept the Insanely Sane and Perfectly Imperfect

My daughter uses equipment that helps her remain upright (such as her wheelchair) and appropriately positioned (such as her orthoses). This equipment makes her stand out from others, and her uncontrolled movements force her to face unique challenges. However, in many ways she is a pretty typical kid. She has a spunky sense of humor, smiling in response to my self-deprecating remarks, to her siblings' complaints and to silly noises, including her own bodily functions. She frequently gets a second wind when we tell her it's time for a nap, and just laughs in her bed in the dim light when we all know she has reason to be tired and we need her to have a good rest before going on an outing. She is also an expert at "playing possum," closing her eyes and pretending to be tired or even asleep just because she does not feel like participating in an activity or therapy session at that moment. Those who can see beyond the physical equipment that frequently surrounds her and instead witness her sneaky behaviors are able to appreciate personality and accept differences as normal.

We all have our quirks, and at some point in our lives, that quirk or some unexpected condition will cause a big shift in our daily functioning that may be temporary, or in some less fortunate cases, permanent. In fact, several family members have likely gained perspective of my daughter's struggles when they were confined in some way by an unexpected injury or necessary surgery. Nevertheless, even if new physical limitations require us to use new equipment, our basic personality or desire to express ourselves to friends and family will not change. While fondly witnessing our daughter's successful attempts to express herself in spite of her limitations, we are reminded that she is perfect in her own way, and that it is important to accept imperfection as an expected part of an endearing personality.

~~~

Take Calculated Risks, Remain Cautiously Optimistic, and Make Tentative Conclusions

As much as we have learned to be flexible and tolerate unexpected shifts in the best-laid plans, as parents we are very unsettled by shifts that reduce our child's quality of life. The authority and the responsibility to make medical decisions for our daughter weigh heavily on my husband and me, because every intervention (or lack of intervention) incurs some dangerous risks. When risks seem particularly dangerous, we are forced to try and weigh potential benefits and setbacks in an immeasurably dynamic system that is difficult to predict.

The level of complexity makes this effort so confusing that we are often stymied trying to find a workable solution that ameliorates her condition. We can get lost focusing on the "what ifs," the "then whats," and the "how cans." Furthermore, all this deliberation drums up strong emotion, such as sadness that our daughter's suffering requires consideration of complex or invasive interventions, anger that she may have to be put through pain to ease her suffering, and an intense fear of the unknown.

Not surprisingly, this strong emotion makes us want to throw in the towel until a glimpse of her suffering brings a reminder of what we cherish most: her happiness. This reminder, in turn, guides us to a hopeful solution, usually a calculated risk. That is, we carefully research our options until we are satisfied both with the treatment plan and with the individuals in whose hands we are placing our daughter, recognizing that these factors are all we can control. When surgery is the only possible option, we focus on the pain inflicted during both her surgery and her recovery as a short-term setback that will hopefully improve her long-term functioning and comfort. Being cautiously optimistic in this way helps us to maintain hope while facing challenging odds and experiencing confounding negative emotions.

Indeed, when we first learned of my daughter's poor prognosis and the generally uncertain course of her illness, we were devastated. We were similarly overwhelmed with emotion, struggling with how to proceed until we made a tentative conclusion that we should maximize her quality of life because she fought so hard to be with us. We had no idea how important the decision would be to maximize her quality of life over the course of her still unpredictable lifespan. We also did not know how we'd continue to find the strength in the midst of strong emotion (grief, fear, anger and sadness with every moment of suffering) to remain committed to this difficult decision. However, forced to witness a loved one's suffering makes us reflect on what brings us joy, ultimately drawing upon our strength and commitment to recover that joy.

That is, witnessing her suffering drums up the emotion that sets off our stubborn determination to do whatever it takes to maintain her comfort and our common joy. This is by far her most powerful life lesson in contradiction, because it continues to develop our souls in ways we could not have predicted. It enlightens us and encourages us to live and love fiercely, capturing as many joyful moments as possible along life's unpredictable journey.

Erin has a PhD in
Clinical Child Psychology but is currently focused on taking care of her
three children's needs. Her second child, Brooke, has multiple severe
disabilities as a result of unexpected complications around the time of
her birth. She is 100% dependent (non-verbal and non-mobile), requiring
tube-feedings, catheterization every few hours, supplemental oxygen and
hydration overnight, vagus nerve stimulation, special positioning and
creative caregiving. She has been diagnosed with severe cystic
encephalomalacia, chronic kidney failure, secondary microcephaly,
reflux, cortical visual impairment, severe cerebral palsy, sleep apnea,
refractory epilepsy and a neurogenic bladder. Erin documents how her
family keeps Brooke happy and engaged on Adapted World.

Copyright 2011 Complex Child E-Magazine. All Rights Reserved.

The information on these pages is not a substitute for appropriate medical care. Please contact your child's physicians before making any changes in your child's care. Complex Child is for research purposes only and does not constitute medical advice.